Ta Da
🙂
I made it, back to work, tidied my desk, sharpened the pencils, had a coffee, told HR I was back, dished out the ink, rang ESA to say I was back to work, booked a holiday, met a few new people, got given a car parking space…. 😉
……. Then got sent home again!
I'm totally, completely and utterly whacked now, …..with a…[Read more]

Hi Tina
I was on revlimid, dex and cyclophos and took 4 – 5 weeks after it finished for all the effects to wear off, but I was pretty well back to normal then with much better energy levels even than I have now. They never wore off while I was on it. I'm on revlimid now, only as maintenance and some have come back again:-( Hope you are soon…[Read more]

Hi Teresa
Thanks for the message, yes tomorrow I go back, I'm looking forward to it, for the moment…….
It is still raining, we have had a family meal out tonight, normally this time of year we celebrate the summer birthdays outside a pub, tonight we were indoors with a roaring log fire! I've put the heating on for an hour when we got…[Read more]

Hi Beverly
I probably had smouldering mm for about 3- 4 years before it changed to end stage disease. I thought I was having a bit of a struggle with arthritis, being a 50+ nurse! Don't get too tired or run down and I hope it stays 'smouldering' for many many years.
Love Helen

Hi Vicki
Colin only needs to suck ice for about an hour max, so I made ice cubes in those bags and took them in a cool bag to go straight into the freezer when we got there. I think I made hundreds of them , I used different flavours from those kids fruit drinks, Ribena, fruit shots, some with very little flavour and lots of them diluted down…[Read more]

Dear all
I didn't have cyclophosphamide priming before my stem cell collection, there were no beds available in the region for the drip to be given!! I was not a happy bunny may i tell you, this change of plan really upset me. However they told me that it would not delay my transplant as they dont always do cyclophos priming in our neck of the…[Read more]

Thanks Ali and Theresa
Wednesday is D day barring further acts of god!
Love Helen

Dear Teresa
Poor Peter, and you, it must be very difficult, I'm sending you lots of hope that pain control is reached very soon. Don't worry about replying to post, just know we think of you.

A fried garden:-) I'm going to photograph the jungle that has grown here recently due to the monsoon type weather we've had. It is so lush and green, but…[Read more]

Oh dear Dai,
Hope you are soon back on your feet.
Love Helen

Hi Gary
As Tom said, same for me, many problems with food staying down so I took the anti sickness tablets and the omeprazole for months after my transplant, I've not lost that much weight but haven't put any on either. Only bland food worked for me at the beginning and there are still many things that I can't eat and the sight and smell of some…[Read more]

Hi Dee
At the beginning, while you get used to the drugs you are not fit to do much really. It's exhausting and anything feels like an effort. You also are coming to terms with the shock of your diagnosis and the effect it is going to have on life as you know it. From now on he will be a different person. He will be taking stock, prioritising and…[Read more]

Hi Ali
Yes I go back on a phased return thankfully. I'm not good at sleeping at the best of times but when ive been ill i sleep during the day more, i think its about having done lots of night duty in the past:-( but the revlimid I'm on as maintenance is on its own, no dex- that's the one which keeps you awake, so I find I sleep well enough if I…[Read more]

Hi David
Do you have much time to do this? My idea may take a while but it is special.
I suggest you buy, make, steal, borrow or invent a small gift for every year which matches with the years.
For example anniversaries have names, this will be your golden.
1st year is paper then there is leather ,tin, copper, china, pearl, silver etc
So for…[Read more]

Hi Andy
Its good that you are getting referred to the top man. My understanding is that the bone marrow biopsy is the determining factor in relation to myeloma. Unbeknown to me until quite recently I was genetically tested (I dont know when) and found to have two chromosomal abnormalities which affect my prognosis, monosomy 13 which is considered…[Read more]

Hi Ali
I'm much better now thanks, Though back to sleeping all day and awake all night, got to start sorting that out again! Thanks for the compliment too:-)
Love Helen

Hi Andy
Myeloma clinic, always a Tuesday, multi disciplinary, ask as you get to the desk to see Prof Jackson, be prepared to wait a long time sometimes. Parking is horrible, get dropped at the door by someone athletic enough to walk back over the site when they eventually find a space. Coffee shop is ok though let us know when you go.
Love Helen

Hi Wendy,
Good photo, where's the new hair then eh? I'm amazed you were back at work at 2 months post SCT. I'm now aiming for my third attempt at going back, having had all those horrible infections and being signed off again and again, anyway onwards as Tom says. And you are right, retirement may not be a financial option, i did request a…[Read more]

Hi Andy
Well I'll see you in the waiting room at the Freeman then, Tuesday mornings. I had Rev, Dex and cyclophos for my induction therapy, hope it works for you.
Love Helen

Hello Dee
Every one is different, he will only get what they think he needs to reduce the cancer cells to the lowest level. He is a year younger than me, I had 4 cycles initially. A bone marrow biopsy then showed complete remission. So I went on to have auto stem cell transplant, as he may well do if he has a good result and his kidney function…[Read more]